Changes in psychosocial health in young adults with kidney failure: a 5-year follow-up of the speak study

Abstract Background and Aims Young adulthood is a sensitive developmental period, and the psychosocial impact of kidney failure in this group is implicated in the observed high risk for transplant loss and death. In the Surveying People Experiencing young Adult Kidney failure (SPEAK) study we described differences in life-course outcomes, worse mental wellbeing and twice the likelihood of psychological disturbance among UK young adults with kidney failure (transplant or dialysis) compared to the general population. There have been no longitudinal studies investigating the natural history of these outcomes as young adults mature and get older. We undertook SPEAK-2 as a five-year follow-up study to address this. Method In this prospective observational study, respondents to SPEAK were invited to complete a revised online survey. PPI guided components of the original survey to amend. We analysed how psychosocial health had changed among respondents between studies using the paired t-test, Wilcoxon signed-rank test and McNemar's test for continues parametric and non-parametric data, and binary data respectively. We compared responses to age-matched respondents of the Health Survey for England 2012 using regression. Responses were weighted to increase generalisability. Results We had 158 survey responses. The analysis of psychological health change over time is presented in Table 1. A greater proportion of participants had evidence of psychological morbidity (45% versus 24% in the original SPEAK study; p<0.001). They had inferior mental wellbeing (Warwick-Edinburgh Mental Wellbeing Scale [WEMWBS] β, -1.76; 95% CI, -3.27 to -0.25; P = .02). No differences were identified in domains including quality of life (EQ5D). Key outcomes of the comparison to the age-matched general population are presented in Table 2. Respondents were less likely to be married or have children and were more likely to be living with their parents. They were almost 15 times more likely to report being unable to work due to health. Respondents had poorer quality of life and poorer mental wellbeing compared to the general population. They also five times greater odds of having psychological problems or mental ill health. Conclusion We report the first longitudinal study of the psychosocial health of a cohort of young adults with kidney failure as they age and mature. Over five years, we observed worse psychosocial health in terms of mental wellbeing and psychological morbidity. Respondents also lagged behind their peers in terms of life-course and psychosocial outcomes. Dedicated long-term follow-up is needed to clarify the extent and duration to which kidney failure in young adulthood impacts life participation and psychosocial health in the long term. Regardless, the degree of psychosocial ill health we have described warrants urgent increased support for this group.